Suggestions for Managing Behavior of People with HD
From the Spring 2000 issue of Hopes & Dreams, newsletter of the Illinois Chapter, Huntington's Disease Society of America.
Most unacceptable behavior is in response to unmet personal needs, frustration, or a sense of powerlessness. People with Huntington's Disease (HD), because of organic brain damage, are unable to rationalize certain situations and, therefore, may appear to be irrational, demanding, or selfish. They are often unable to learn new tasks. Techniques using reward and punishment and behavior modification are beyond their mental ability.
In difficult situations, caregivers who are tired and overworked may stop rationalizing the behavior and fall into the trap of reacting to it by becoming either authoritarian, rude, or even angry. Often caregivers will forget that the person with HD is brain impaired, and that the impairment is one of the reasons for the behavior.
- Don't argue with the person. Remember he or she may no longer have the ability to be as rational as you.
- Don't order the person around. Few of us like to be "bossed" and the HD person is no exception. State direction positively rather than negatively. Instead of "You can't go," say something like, "Let's look at these pictures."
- Don't be condescending. A condescending tone may provoke anger even if the words are not understood.
- Don't ask a lot of questions that rely on good memory. Remember, the person may have memory loss and may feel humiliated or angry if you ask questions he or she can't answer.
- Don't speak about the person as if he or she were not there.
- Do try distracting the person. Diverting the person's attention to a different activity, offering a snack, may be enough to diffuse an angry mood.
- Do ignore the verbal outburst if you can't think of any positive response.
- Do reward positive behavior with a favorite food, a hug, and sincere praise.
- Do offer "cooling off" time in a quite room. It can help the person regain control of feelings or behavior.
- Do try forms of communication that don't involve words.
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Created: July 4, 2000
Last updated: Dec. 6, 2010